Think Tank on the Future of Day Programs Serving the Growing Population of Young Adults with More Severe Forms of Autism and Related Disorders
November 12, 2014, 11-1, University Club of Palo Alto
Twenty service providers and developmental disability community leaders attended our Think Tank. The main theme to emerge was "unfunded mandate"—the Regional Centers and service providers are providing a necessary social service for some of the most disabled individuals in our community, but they are systematically underfunded, to the degree programs are shutting down and cannot expand. Waitlists are growing, providers are struggling to stay afloat, and families are panicking.
Major messages:
• System meltdown: Current system is woefully inadequate to meet the needs of ever-increasing population of those with intensive needs; a sense the system is cracking under pressure of restricted funding and increasing demand.
• Qualitative differences: Adults with autism often present service needs not provided in current adult DD programs: for example, structure, visual aids, AAC, training, higher ratios, behavioral supports, sense of community and peer group.
• Fragmented: System is fragmented, fractured, resulting in failure of necessary service provision, for example with health care and mental health.
• Staff: Difficulty finding, training and keeping qualified staff, funding is threadbare, we need a career ladder for these workers, this work is a noble profession.
• RC Caseloads: Regional Center caseloads have surged and are now overwhelming service coordinators.
• Facilities are needed as “hubs” for adult programs, but this can be prohibitively expensive, and subject to additional costly rules and regulations for purposes of licensing.
• Broaden the scope: Look beyond DDS for funding and solutions, insurance, philanthropy, bond measures, etc.
• Community Placement Plan should encompass needs of DD adults living in the community and living with parents, not just coming from institutions, it's an arbitrary dividing line.
• Family panic. Palpable sense of anxiety among parents about availability and quality of programs for adults with autism.
• Start-up funds. As demand surges, no start-up funds via purchase-of-service available to get new or expanded programs off the ground. There have been no start-up funds since 2003.
• Vendor rates unrealistic, inadequate: Service providers face systematic funding shortfalls for adult programs, only about 80% of expenses are covered. Median rate rule disastrous for expensive region like Bay Area.
• Advocacy: There’s only so much service providers can do, they are seen as self-serving. Need for autism/dd parents to organize as strong advocates for reform. Parents are not energized, they are confused about the system and fighting their own battles for their own children. Need to craft concise, targeted messages. In terms of advocacy target, is the bottleneck the legislature or the governor, or both?
• Telling our story: A need to convey our stories to the policymakers and the general public. These stories tend to be hidden and out of the public eye.
• Appraisal of need: Need for better ascertainment of support needs, to better project needs for new programs and operating funding. (Such as including Supports Intensity Scale in CDER or similar effort). In addition, we need to know the number of adults whose programs have closed, and the impact on clients, families, related services. What are the waitlists? We need to document the service needs for tens of thousands of people with severe disability.
• Defining “intensive need.” This meeting is about young adults with more severe disabilities and intensive needs: how is this defined? Existing statistics are difficult to plumb for differentiation as to severity and intensity of need.
• Self-determination. This could help open new avenues for custom programs.
Various next steps were discussed, in terms of advocacy, publicity, and data gathering.
(Notes by Jennifer Sullivan and Jill Escher)
November 12, 2014, 11-1, University Club of Palo Alto
Twenty service providers and developmental disability community leaders attended our Think Tank. The main theme to emerge was "unfunded mandate"—the Regional Centers and service providers are providing a necessary social service for some of the most disabled individuals in our community, but they are systematically underfunded, to the degree programs are shutting down and cannot expand. Waitlists are growing, providers are struggling to stay afloat, and families are panicking.
Major messages:
• System meltdown: Current system is woefully inadequate to meet the needs of ever-increasing population of those with intensive needs; a sense the system is cracking under pressure of restricted funding and increasing demand.
• Qualitative differences: Adults with autism often present service needs not provided in current adult DD programs: for example, structure, visual aids, AAC, training, higher ratios, behavioral supports, sense of community and peer group.
• Fragmented: System is fragmented, fractured, resulting in failure of necessary service provision, for example with health care and mental health.
• Staff: Difficulty finding, training and keeping qualified staff, funding is threadbare, we need a career ladder for these workers, this work is a noble profession.
• RC Caseloads: Regional Center caseloads have surged and are now overwhelming service coordinators.
• Facilities are needed as “hubs” for adult programs, but this can be prohibitively expensive, and subject to additional costly rules and regulations for purposes of licensing.
• Broaden the scope: Look beyond DDS for funding and solutions, insurance, philanthropy, bond measures, etc.
• Community Placement Plan should encompass needs of DD adults living in the community and living with parents, not just coming from institutions, it's an arbitrary dividing line.
• Family panic. Palpable sense of anxiety among parents about availability and quality of programs for adults with autism.
• Start-up funds. As demand surges, no start-up funds via purchase-of-service available to get new or expanded programs off the ground. There have been no start-up funds since 2003.
• Vendor rates unrealistic, inadequate: Service providers face systematic funding shortfalls for adult programs, only about 80% of expenses are covered. Median rate rule disastrous for expensive region like Bay Area.
• Advocacy: There’s only so much service providers can do, they are seen as self-serving. Need for autism/dd parents to organize as strong advocates for reform. Parents are not energized, they are confused about the system and fighting their own battles for their own children. Need to craft concise, targeted messages. In terms of advocacy target, is the bottleneck the legislature or the governor, or both?
• Telling our story: A need to convey our stories to the policymakers and the general public. These stories tend to be hidden and out of the public eye.
• Appraisal of need: Need for better ascertainment of support needs, to better project needs for new programs and operating funding. (Such as including Supports Intensity Scale in CDER or similar effort). In addition, we need to know the number of adults whose programs have closed, and the impact on clients, families, related services. What are the waitlists? We need to document the service needs for tens of thousands of people with severe disability.
• Defining “intensive need.” This meeting is about young adults with more severe disabilities and intensive needs: how is this defined? Existing statistics are difficult to plumb for differentiation as to severity and intensity of need.
• Self-determination. This could help open new avenues for custom programs.
Various next steps were discussed, in terms of advocacy, publicity, and data gathering.
(Notes by Jennifer Sullivan and Jill Escher)